Distress and hopelessness among parents of children with congenital heartdisease, parents of children with other diseases and parents of healthy children

• Objective: We examined differences in distress (i.e., depression, anxiety, and somatisation) and hopelessness (e.g., suicide ideation) among parents of congenital heart disease (CHD) children (PCCHD, n=1092), parents of children with other diseases (PCOD, n=112), and parents of healthy children (PHC, n=293). In addition, we determined the proportion of parents in each group whose scores in distress and hopelessness, respectively, exceeded norms for psychiatric outpatients (POPN) and depressed people, and identified determinants of distress and hopelessness among all parents, and the PCCHD. Method: The parents completed a questionnaire about such areas as distress and hopelessness. The design was cross-sectional and data were collected during 20 consecutive days. Results: PCCHD were generally at higher risk of distress and hopelessness. A significant number of parents, in particular PCCHD, reported levels of distress and hopelessness within/above POPN and depressed people, respectively. Mothers within all parent groups had higher levels of distress and hopelessness than fathers, with the highest levels among mothers of children with CHD compared to mothers in the other groups. Fathers of children with CHD were doing worse than fathers belonging to the other groups. There were no differences between PCOD and PHC. Variables such as employment status and financial situation explained more of the variation in distress and hopelessness among parents than the diseases of their children. Conclusion: We corroborated previous findings and provide new insights into the experiences of PCCHD that may be of importance when considering intervention. Further research concerning the parents, in particular PCCHD, at risk of developing psychosocial problems is needed.

Nyckelord

Congenital heart disease; Distress; Hopelessness; Mothers; Fathers; parents; Predictors

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